Iconquerms: A Patient-Powered Research Network for Multiple Sclerosis

Background: Accelerated Cure for MS (AC-MS) is an advocacy organization that creates resources that catalyze collaborative research. In partnership with Arizona State University and Feinstein Kean Healthcare, AC-MS has developed an MS Patient-Powered Research Network (MS-PPRN), called iConquerMS™, to drive and enable research on topics important to people with MS. iConquerMS is a member of PCORnet, a linked group of PCORI-funded research networks incorporating health data from millions of people across the US.

Objectives:

• Facilitate patient enrollment in the network, with a goal of 20,000 members enrolled by September 2015
• Collect de-identified patient-reported data, biosamples, and EHRs from participants to support research studies
• Provide mechanisms for investigators and patients alike to propose topics for research studies
• Facilitate the review, approval, and implementation of research studies using samples and data collected from network participants
• Disseminate information such as network population data and research findings to network members

Methods: Participants enroll and provide informed consent via the web portal iConquerMS.org. Enrolled participants provide health data by completing surveys and uploading their EHRs. Research topics and study proposals are solicited, developed, and approved through processes that incorporate input from iConquerMS participants and ensure scientific rigor and feasibility. To ensure that iConquerMS remains “patient-powered,” people with MS constitute the majority of members of the governance structure of iConquerMS.

Results: As of mid-January, after a “soft” launch, iConquerMS membership is 590 individuals. The governance structure includes people with MS, researchers, and representatives from other MS advocacy organizations. Policies and processes supporting iConquerMS research activities are being developed and outreach to the research community is underway.

Conclusions: iConquerMS is an initiative by and for people with MS who understand the need to contribute their ideas and health data to fuel medical research. iConquerMS offers people living with MS an opportunity to drive research on topics that matter most to them and represents a bridge connecting people with MS to the research community. Data collected via iConquerMS will enable insights into a wide variety of topics, such as symptoms, treatment outcomes, and quality of life, and could lead to improved diagnoses, better treatments and, ultimately, cures for MS.